Member: Eastmum | BCNA Online Network

User Widgets

Contributions

Re: Happy Birthday wishes to @Eastmum for 17th August !
Thank you so much! 🥰🥰
6 years ago Place Birthday board
Views
1like
Comments
Re: Learn more about Lobular
@Sister and @Flaneuse - nice to see your ‘voices’ hope you’re both doing well xxx
6 years ago Place General discussions
Views
1like
Comments
Re: Learn more about Lobular
@arpie - yep great to post it there! I’m not sure how many new people are aware that lobular is so different, which is why I chose to post it for everyone. As @ddon’s post suggests, some doctors aren’t even telling their patients that the type of cancer they have let alone highlight the differences.
6 years ago Place General discussions
Views
1like
Comments
Re: Learn more about Lobular
Don’t be alarmed - be aware :) Knowledge is key! The more we know and the more education we can get out there, the more informed people will be and the better they can advocate for themselves. Knowing that you have lobular cancer and all that could mean gives you more power to insist on checks and tests that you may not have thought of being important before - such as colonoscopy etc. I agree, it’s scary but it’s also very important to know. I’m really surprised that you weren’t informed by any of your doctors that you had lobular cancer. It just goes to show how much more we need to do to get awareness out there.
6 years ago Place General discussions
Views
0likes
Comments
Re: Learn more about Lobular
Hi @ddon - lobular Cancer can be very different to ductal yet most oncologists don’t treat it differently. This is part of the problem. The research that has been done so far, supports that most (not all) lobular cancers have very specific characteristics in terms of being hormone responsive, responding to chemotherapy etc. The other thing about lobular is that it is recognized to metastasize in a different way. I recommend that you look at the information on this website - there’s a lot of excellent information. https://lobularbreastcancer.org/
6 years ago Place General discussions
Views
1like
Comments
Learn more about Lobular
Hi everyone - I haven’t posted for a very long time as I’ve been mainly involved in several Facebook groups - two of them, specifically designed for people diagnosed with ILC or invasive lobular carcinoma. While there’s a separate BCNA group for lobular cancer people, there’s a ton of information out there, that’s just not getting enough distribution in Australia. The BCNA lobular podcast has some excellent information and also misses a lot of information. I’m writing now, because I’d like to share an article that’s just been written for Healthline in the USA, that sums up lobular in a easy to understand way, and highlights the need for more exposure and more research. In the article, there are great links to follow including a link to the Lobular Breast Cancer Alliance (LBCA), an all-volunteer advocacy organisation in the US and now in the UK, trying to raise the profile of ILC in all ways humanly possible. I urge any lobular peeps to check it out. Please reach out if you have any questions about online ILC resources. https://www.healthline.com/health/breast-cancer/invasive-lobular-carcinoma-is-an-understudied-form-of-breast-cancer-its-time-to-change-that#Clinical-trials-are-few-and-far-between
6 years ago Place General discussions
lobular-carcinoma
Views
1like
Comments
Re: Living in fear
Hi @Sydney - first of all, wishing you all the best and go you! You've come so far already. Through surgery and chemo - before you know it, you'll see the light at the end of the radiation tunnel. As the others have said, recurrence is always something that's at the back of our minds. I find that thinking of the future in 'chunks' can really help. Because I work in a school, my life revolves around school terms so I think one term ahead and then when I look back it's like 'wow'! It's already been 18 months since my diagnosis - where did that time go? Don't be surprised that you might feel a bit more 'lost' when active treatment finishes. That's when you're in a sort of limbo. As time goes on though, it's a little easier to adjust to the new normal and enjoy each day as it comes. Lots of hugs xxxx
6 years ago Place General
Views
1like
Comments
Re: Is this normal?
Hi - it's really normal for the after-effects of radiation to manifest a few weeks after the radiation has finished. It usually gets better before it gets worse but then gets better very quickly. Definitely have it checked out though. Wishing you all the best x
6 years ago Place Side effects
Views
0likes
Comments
Re: Bisphosphonates to reduce bone mets
Yes @primek I’ve always taken ‘recurrence’ to mean any type of recurrence of breast cancer anywhere in the body - so I guess local or Mets. I’m going to ask my oncologist about prolia @melclarity xx
6 years ago Place General
Views
0likes
Comments
Re: Newly Diagnosed - glad to learn of this Network!
Hi @aussiee13 - so glad you found this network. Sorry to hear about everything you’re going through on top of your diagnosis. You’ll find this forum a Godsend. There’s always someone online that you can have a chat with, seek advice from or just ‘vent’ to. Wishing you only everything of the best. Xx
6 years ago Place General
Views
1like
Comments

Groups

Let's talk: vaginas, menopause & me
PRIVATE GROUP. This group is a safe, supportive space to talk about sexual health and emotional wellbeing during and after breast cancer. We discuss topics like menopause, vaginal dryness, pain during sex, UTIs, and changes in libido, and share ideas and products that may help. Whether you're navigating intimacy with a partner or reconnecting with yourself, you're not alone here. This is a place for open, respectful conversations and shared understanding.
Invasive Lobular Cancer (ILC)
This group is for anyone diagnosed with invasive lobular breast cancer (ILC), which begins in the milk-producing lobules and accounts for around 10% of invasive breast cancers (US statistics). Connect with others, share experiences, and access peer support from people who understand the unique aspects of an ILC diagnosis.
Choosing breast reconstruction
PRIVATE GROUP. Choosing breast reconstruction after single or double mastectomy can feel overwhelming, and deeply personal. This group is here to connect you through others' stories and images. Please respect everyone’s privacy—do not copy or share content outside this space. Information is based on personal experience and is not medical advice; always consult your healthcare team for guidance. ⚠️CONTENT WARNING⚠️ Members may share photos of breast surgeries. These images or discussions may be distressing or triggering for some. If you need support, please contact the BCNA Helpline - we are here for you.

User Profile

Eastmum

User Widgets

Let's talk: vaginas, menopause & me

Invasive Lobular Cancer (ILC)

Choosing breast reconstruction